OMG Merl, If I have to read about docs causing people to question their sanity one more time I’m going to scream! As a mod. you must see that a lot.
At that insane, horrifying time of learning how to cope with AVM symptoms for a doc. to make you feel that is ridiculous. I’m struggling to see any positive result that could be gained by a doc causing such a feeling. Bless your heart for somehow maintaining a good attitude and passing your wisdom on here. Greg
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Yes, especially for rare conditions. We often go to dr’s looking for answers, often we have an expectation of getting answers. But when the medicos don’t have the answers or cannot identify a cause, the simplest answer is to put it back on the patient. It’s also a form of protection for the medicos when they don’t have the answers ie “Don’t blame me, it must just be YOU”. I was always told ‘The Dr knows best’ and for years I took this approach. They placed me in a psych ward because "You just can’t be having THAT much pain. We can’t find anything…’ so I ignored it all. Odd symptoms, weird sensations etc and got on with life.
So, I’m driving down the road one day and the lights went out, I couldn’t see. I pulled up, called the wife and she took me to the dr. He ordered a scan and came out with the line ‘Ohh, look what we found…’ like it was all something new. I wanted to SCREAM, I’d been telling them for years/decades ‘Something’s not right’ and made out to be every type of crazy. GGGGrrrr.
Now, I question everything. Some medicos work on a need-to-know basis and as one neuro said to me (and I quote) ‘You’re just the patient… …You don’t need to know’. WRONG!!! If it’s about me, I need to know. I need to know the ‘What’, I need to know the ‘Where’ and I need to know the ‘How’ of it all. Some medicos don’t like my questioning, some are actually quite anti about giving answers. NOPE!!! This is about me, not them, not their precious egos and I want…, no, I NEED answers. I have become a strong self-advocate and I don’t play their games anymore.
It was all made out that I was the only one having these oddball symptoms, then I found Ben’s Friends and found that I’m not ‘…the only one…’ at all, in fact some symptoms are rather common. It’s only by sharing our experiences of this god damn awful journey that others may also have that ‘PHEW, so it’s not just me…’ moment.
Merl from the Modsupport Team
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Merl, Sorry you had to go through all of that crap on top of the intense physical and emotional pain we AVM people go through. Again, I’ll say bless your heart for taking that and converting it into the compassion and wisdom you share here. Greg
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Hey Greg,
Thanks.
Here in Australia we have folk hero (of sorts) called Ned Kelly, he was an outlaw. When they caught him and had him on the gallows his last words were “Such is Life” and that’s the way I ‘try’ to look at it, now. Don’t get me wrong here I have days where I want to just hibernate, but what for, it doesn’t get me anywhere. So I think ‘Such is Life’ and get on with it.
Prior to my last surgeries in '13, I used to teach people with disabilities independent living skills and I saw the good, the bad and the ugly… No, I mean the really really, ugly of it all and sure things for me could be much better BUT I also know they could be a hell of a lot worse and they’re not. In all honesty, I’ve got to be thankful for that. So on those days I want to hibernate I give myself a (metaphorical) kick in the pants. I’ve also had the fortune/misfortune of seeing the neuro journey from a few angles, as a patient, as a family member (2 close family members have also had neurosurgeries) and as a teacher/support worker. So multifaceted view I suppose
I can’t work professionally anymore, but using the skills/experience I have to assist others on this ‘…god damn awful journey…’ seems about the only logical thing I can do.
Merl from the Modsupport Team
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Hi Merl, There’s always been something wonderful about Australians’ sense of humor. I love the tall poppy thing where you will give it to anyone, no matter how “important”. You just manage somehow to look on the bright side of life. To tell the truth hibernating is not one of the cardinal sins, if it is you know where I’m going. I’ve actually made some of my best moves in life by not moving at all.
Of course I have my moments of feeling sorry for myself/regrets. These are becoming less frequent. I’m more able to sense others’ pain and feel compassion for them. “Weakness” is a cardinal sin here. (Whatever that is.)
Not many people know how much strength is needed to live w/ an AVM/seizures. We look “normal” for the most part. Now when I see people, especially young ones on here, struggling with decisions like craniotomy v. gama knife etc., I realize how much courage is required just to make a decision. Decisions like travelling across the world to lower risks, etc. these are decisions that could knock John Wayne and Ned Kelly for a loop.
That’s just the uncertainty dimension. Then there is the actual pain, loss, fear…etc. (and shame for me.)
And despite that people like you still insist on sharing, helping and caring for others. I may as well give you a bit of praise, you won’t get as much as you deserve. The only “logical thing you can do” is to assist others. (btw that’s absurd but bless your heart for thinking it.)
I’ve viewed myself as “weak” my whole life pretty much. I’m trying but I can’t seem to shake it. I wish I had your kind of “logic”. Greg
I don’t do this under any illusion of it all being altruistic, it most certainly isn’t. In other words, I get as much (if not more) personal benefit assisting others here too. I know I can sit and roll my thoughts over and over and ov… in ever decreasing circles. It can drive me and everybody else around me bonkers. Helping others takes me outside of ‘Me’ (If that makes sense). I think we all have unique experiences and by sharing those experiences it can assist others to not feel so isolated, because when it comes to neurosurgery, thankfully, it isn’t very common and it can be a very lonely, isolating place.
I say this because being a former worker in the field and not being able to work, utilising the skills I do still have assists me too. So, I’ll take that as a Win/Win situation (I don’t get win/win’s very often 
)
Ohh Greg, that guilt, that shame. That ain’t just yours alone, I can assure you and it ‘bites’ at me each and everyday. My wife, when she was working would leave me a list of tasks. Simple tasks and I’d get so frustrated when I couldn’t complete them, then feel guilty, then ashamed. But I have proven I ‘can’ push my boundaries, but there is always a consequence for doing so. Usually in agony. So, I find I have to weigh up the tasks vs cost and its all so foreign to my former ‘normal’ and then I feel guilty for having a damn headache. Tsk. She gave up leaving me lists. I now have a bit of a routine of tasks that works within my limits, mostly anyway. And when it doesn’t. It just doesn’t. Forcing it isn’t worth the hassle.
Merl from the Modsupport Team
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Merl, Thanks letting me know I’m not alone in my shame. That means a lot to me.
Perhaps your wife just needs a different strategy. I’d suggest a longer list of tasks and purchasing a bull whip.
Btw, you may have to go to confession (if you’re Catholic) and confess that you really may be altruistic. Best wishes and condolences on losing TJ, I know you were close. Greg
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A bull whip? Nahh, I might enjoy that 
(or She might 
)
I was brought up Catholic, but the last time I went to confession was about '84. I doubt any priest would have the time, it would take weeks for me to lay it all out 
As for altruism, I doubt they’d believe me anyway. I could be truly altruistic for the rest of my days and still not payback my penance
I know the church professes ‘altruism’ but it’s all fake. They’re all obtaining a benefit too, they simply label it as ‘All for God and God’s work’ it’s a lie, all of it. I was indoctrinated in the church from a very young age, but I could see the hypocrisy between what was said in the church and the reality of life. Like east and west, the 2 just never meet. Monday to Saturday be as evil as you like, come Sunday go to church say ‘Forgive me, forgive me’ and all will be forgiven??? Then come Monday and it starts again… That’s not my scene. No church for me. I just try to assist people, is that altruistic? Nope, I get as much as I give. It all balances out somewhere. That’s my view.
I know for some people ‘God’ gives them great comfort, I have no problem with that. My family is heavily into the church and that’s fine, it’s just not for me.
Thanks Greg. Losing TJ was a shock and I still think of him every day. May he RIP. No more pain.
Merl from the Modsupport Team
Hi Merl, I’m really just checking up on you to see if you’re okay and behaving. I know it’s a day to day thing with you.
As far as the church, I’m going to try to leave religion alone. Somehow, I don’t know how, I’ve avoided pissing anyone off on here. (that I know of) I’m going to try to not do that. It’s actually my MO (modus oparandi?).
In all seriousness I hope you haven’t had many of those shots through the eyes. (I can’t remember your exact words.) Be well, we have worth, Greg
BTW Merl, I’m totally altruistic…
But if “awards” can be redeemed for cash or coupons I won’t refuse. hahaha Greg
Okay? Yes
Behaving?.. …that might be a stretch
As is often said ‘Two things that should never be spoken about… …Religion and politics’ and on both subjects I have had a bad case of ‘foot in mouth’ disease and said the wrong thing to the wrong person on both topics. I have some ‘firm’ opinions that others disagree with and it tends to get awful messy.
As for the eye pain… Ahhh, it’s a regular, just another one of those things I’ve got to ‘try’ and manage around. Managing triggers is like trying to keep 10balls in the air at the same time, I can juggle a few but I’m sure to drop one sooner or later.
Merl from the Modsupport Team
Hi Merl, That 10 ball metaphor really registered. That must be exhausting, not to mention the actual physical pain. Do you physically lose your balance? I feel for you brother. Be well and in my humble opinion you are “managing” pretty darn well. Greg
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Thanks Greg,
I think there are many of us who have ‘issues’ and it’s how we manage them for ourselves that makes us who we are. I’ve seen people in much worse situation than mine and I think ‘What have I got to complain about?’. I think we all have our ‘load’ and this is mine. I can’t change it, I have to work around it. I’ve had many people all have views and/or opinions, but I ain’t dealing with this for them. I’m trying to manage it all for me. Sometimes those ‘10 balls’ all gang up against me and beat me into submission.
Yes, my balance is an issue. I’ve had a couple of falls but have learnt that when I stand I have to give myself time before moving. It used to be that I could stand and move all in one motion, but try that now I get dizzy and disorientated. The blood rushes from my head and I can find myself on the floor.
Initially I personal aim was ‘I’m going to beat this…’ now I can accept ‘If I can manage today, it’s a good day’ and that’s all I need, tomorrow?.. we’ll deal with that tomorrow.
Merl from the Modsupport Team
Hi Merl, You continue to be a role model/mentor for me. (No, I’m not going to pay you.) On the serious side, I’m not sure how much of my suffering is self-inflicted.
A nice young woman approached me in my parking lot. (No complaints there.) She asked me how my dog was doing. (I had had to give him up about 2 months ago.)
The devastating part is that I have absolutely no recollection of the woman. (The last couple of months is like that.) It scares the crap out of me. Like I don’t even know who I am.
Merl I know you and lots of other people here have worse issues. Am I just being a baby? I am seeking help w/ a therapist next week.
I am a big fan of yours if you couldn’t tell. Thanks for your help, Greg
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If me sharing my knowledge, my experiences are of assistance, that’s worth more than gold to me. Many of my experiences are more a warning to others because if there was a right way and a wrong way, in 90% of my scenarios, I did it in the wrong way.
WHAT?? No pay… Ohh DAMN
NO, NO and NO
It’s so easy to stand on the outside and pass judgement. Living it??? They have no idea.
I’ve said this to others before but if anybody, anywhere tells you this is easy, they have never been here themselves. I’ve lost count of how often people have said to me “My friend ‘John’ had brain surgery and he’s OK…” In the tone of " So what’s YOUR problem…', even close family. When it comes to neurosurgery, every patient is an individual and every procedure is individual to that individual. There is no such thing as ‘normal’ brain surgery. Trying to draw a parallel from one patient to another is impossible. Dr’s like to draw such comparisons, but the reality is 1mm to the left or 1mm to the right can make the world of difference in any outcome.
I’m sure some of my ongoing issues have a level of ‘self-infliction’ too. Not in the way of self harm, but rather pushing my limits too far, doing myself an injury. All of this is about YOU. It’s not about what others think or do, they’re not living it, YOU ARE. You have to manage it all for you, not them. I’ve offered my symptoms to anybody who wants them, including my ‘critics’. But none of them seem willing to take it all on. This is about nobody but you. For a long time I felt I was being selfish (and at times still do). I’ll have a couple of good days and think ‘Ah, I’ve got this thing beat…’ so I do a bit more and a bit more. Then the day after this monster sets up residence in my skull, trying to beat his way out with a sledgehammer. Others can’t see it, can’t feel it, but OMG I do.
I am my own worst critic. I’m harder on myself than anybody else. I have lots of patience with others, but very little with self. I have proven to myself that I can’t push harder, that I can’t do as before or if I do, I’ll be paying for it in symptoms. I know that and I have to work around it to meet my needs. Others want to judge? Go for it. But before you judge, come walk a mile in my shoes. Then we get back to me being selfish… and around we go again.
And that’s a good thing. I had to do exactly the same thing.
I had all of this guilt and nowhere to put the guilt except back on me. I’m a man, men are strong (I wasn’t). Big boys don’t cry, but I was SO fragile. I had all of this #@%$ floating around in my head, going over and over and ov… and I had to get it out. Out to someone outside of me, my friends, my family, my associates. I needed to speak to a professional. My only wish is that I’d done so earlier than I did.
Merl from the Modsupport Team
Hi Merl, Thank you (more than you know.) I see now what one of my problems is. I’ve been looking at “me” and my life through a sort of artificial tinted lens. (Assuming my projection of what others supposedly think matters more than me.)
Another thing I’m learning from you is that this dimension of our lives is largely invisible to others. Stay well and be kind to yourself. Greg
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Hey Greg,
I think that lens tint has a large portion of ‘social expectation’ or ‘societal norms’ added. I can’t meet my own expectations and when it comes to neurosurgery, well, there is no such thing as ‘normal’. It took me a long time and much angst towards self to get to a point of (semi) acceptance.
In my former life I had aims, I had goals and I was hitting monuments along the way to reach those goals. There were a few hiccups/falters along the way that set me back, but I kept pushing forward. Then my neurosurgical journey started. This wasn’t just a setback, it was a ‘factory reset’. Skills I’d developed had vanished; tasks that were like second nature became a HUGE challenge and this was all very demoralising. I think that ‘invisibility’ plays a big role too, if we’d lost a limb others would be able to see why there’s an issue, but because it’s invisible it’s easier for some to pass some sort of moralistic judgement, ‘…but you look OK…’ I want to tell them “Well, you want to come have a look from this side…Looks can be very deceiving”
Merl from the Modsupport Team
Yeah. I took a very measured approach to my self-worth up to about the age of 40. At 40, I decided that earning my way up people’s regards wasn’t working: more successful people didn’t look to earn respect, they just assumed it and got on with climbing whatever tree they were set upon.
So I cast off my need to carefully earn respect from others at 40 and decided I was old enough and of sufficient standing to stand by anyone by that age. But WHAT A WASTE OF TIME to wait until 40. Throw off those chains as early as you can! Nobody else cares about them. Don’t be bound by them yourself.
carpe diem as I’ve said once already recently.
Richard
Richard, Good for you casting off the burden of imaginary expectations at age 40. I wish I could say the same. I think a team of skilled psychiatrists would be baffled by me for not doing that, even by age 63. But I am working on it through meditation. (The present moment, the reality of here and now doesn’t care about such tripe.)
Like you said it’s a waste of time. That’s wisdom.
I’m grateful every day that I wake up and I’m not in the hospital.
Thanks and best wishes, Greg
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Greg,
Appreciate it isn’t easy but anything you can do to loosen the burden of what other people think, do it. It’s not good to lose it completely but you’re wearing it a bit tight.
Richard